My mum and 1 sibling know but that is because my hubbie told them over the phone - not best way but there was also a lot of other things happening and he just covered all bases. They've never seen me in my pro-longed seizures so if they do they'll probably freak. We leave in different countries.
I'm not sure of the best way ahead. I can imagine that you don't want your mum's first image of you to be in crutches and then rush to the internet to find rubbish articles saying its all in the head and from childhood trauma. All I can think is to call and talk and direct her to FNDHope so that she gets the right advice the first time. And then you can let her know how your physical needs have changed so that she can make sure things work smoothly at Christmas. Plus she can let other family members know if you will also be seeing them at Christmas and you are ok with her telling them.
Hope this helps. I'm an Irish mother and you know what they say about Irish Mas' and their boys. They can never do any wrong in their ma's eyes.
Yeah, I guess calling my mum and talking to her is the best as you suggested. It's complicated enough. I would need a bit of courage to do that, though. Telling something like this to the family is the hardest thing for me to do, especially I'm far far away from home, and my mum she is 73 years old. I suppose it would be a lot for her to take in, too. I'm the youngest in the family, so you know, she worries a lot. I'll pull my thoughts together (My mind is still messed up with FND) and ring her in the next few weeks
Just tell her you have a Neurological Dissorder similar to ms symptom wise, let her know it isn't a dieses so you are not going to die from it . It is Easyer to say we have a Neurological Dissorder that doctors don't know much about.
This is exactly how I describe it. Not only is it an easier explanation for someone to understand the symptoms but it also stops further questioning in its tracks!
My son has fnd , and I was upset for him , but over time ,understanding and love ,finding out it is just like ms , has made me stronger for him , he copes with this so well ,he has good and bad days ,and I will always be there for him ,as I am sure your mum would be , I am 75 , and have learnt to understand ,this is not life threatening,and however hard it might be for u to tell your mum , I’m sure she will be very understanding.
Hi there ..some great advice on here for you. I was just thinking, as I also live away from my family and going home for Christmas....
I stressed to my family, that I may and hope to improve over time, but at the moment I also need to focus on adapting my life, bit by bit to accomodate these fluctuating symptons.
As with most potentially long term conditions, it's about discovering various ways to 'manage ' the pain/symptons, so you can still live as full a life as possible.
My family live in the suburban Midlands of the UK and they tend to drive everywhere, therefore they don't see me at my worst, as such little walking needed when I visit ....
But I've explained, that I need to get up and go for little stroll, (rather limp around) .to the ladies, after every course if we eat out at a restaurant, to prevent my back and leg muscles stiffening up so much and ceasing up etc ....so I can still get back to the car with my walking stick after the dinner.
I also explained about 'pacing' how I need to say no to some things and rest, so I can still enjoy other things.....
I really hope the call goes well and then your Mum will have some time to digest the news, before you arrive
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